Does Caregiver Participation in Advance Care Planning Using a Decision Support Tool Together With Patients Reduce Caregiver Strain, Burden and Anxiety Over Time? A Post-Hoc Analysis of a Randomized Controlled Trial

2021 ◽  
pp. 104990912110402
Author(s):  
Bronson R. Kunzler ◽  
Andrew J. Foy ◽  
Benjamin H. Levi ◽  
Lauren J. Van Scoy ◽  
Erik B. Lehman ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Decision Support Tool ◽  
Study Groups ◽  
Decision Makers ◽  
Support Tool ◽  
Randomized Controlled ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Surrogate Decision ◽  
Post Hoc

Context: Surrogate decision makers experience significant amounts of anxiety, burden, and strain in their role as caregivers and decision makers for loved ones. Objectives: To investigate longitudinally whether surrogate decision makers engaging in ACP together with their loved one reduces perceived anxiety, burden, and strain felt by surrogate decision makers. Methods: Post-hoc analysis of a randomized controlled trial evaluating caregivers’ perceived self-efficacy to serve as surrogate decision makers. The trial employed a 2×2 study design of patient/caregiver dyads who engaged in advance care planning (ACP) using a standard living will form vs “Making Your Wishes Known” (MYWK), and having the patient engage in ACP alone vs together with the family caregiver. Surrogates completed validated survey instruments surveys longitudinally to compare levels of anxiety, burden, and strain. Results: 246 of 285 dyads completed the measures. No significant reductions in anxiety, burden, or strain were found longitudinally in surrogate decision makers using MYWK together with loved one’s vs other control groups. Increases in strain and anxiety were seen across all study groups and increases in burden across 2/4 study groups. Strain and burden increased most in the MYWK Together arm (▴ = +2.22 and ▴ = +1.91 respectively). Conclusion: Family caregivers who engaged in ACP together with patients using the decision support tool MYWK did not experience less strain, burden, or anxiety longitudinally compared to other study arms. These results may help inform the design of future studies and interventions that promote caregivers’ involvement in ACP interventions.

scholarly journals Randomized, Controlled Trial of an Advance Care Planning Video Decision Support Tool for Patients With Advanced Heart Failure

Circulation ◽  
2016 ◽  
Vol 134 (1) ◽  
pp. 52-60 ◽  
Author(s):  
Areej El-Jawahri ◽  
Michael K. Paasche-Orlow ◽  
Dan Matlock ◽  
Lynne Warner Stevenson ◽  
Eldrin F. Lewis ◽  
...  
Keyword(s):  
Heart Failure ◽  
Randomized Controlled Trial ◽  
Decision Support ◽  
Controlled Trial ◽  
Decision Support Tool ◽  
Advanced Heart Failure ◽  
Care Planning ◽  
Support Tool ◽  
Randomized Controlled ◽  
Advance Care

A Qualitative Analysis of Factors Influencing Critical Care Trial Enrollment Among Surrogates

2021 ◽  
pp. 088506662199897
Author(s):  
Dustin C. Krutsinger ◽  
Breanna D. Hetland ◽  
Kelly L. O’Leary ◽  
Scott D. Halpern ◽  
Katherine R. Courtright
Keyword(s):  
Randomized Controlled Trial ◽  
Critical Care ◽  
Respiratory Failure ◽  
Acute Respiratory Failure ◽  
Controlled Trial ◽  
Decision Makers ◽  
Free Text ◽  
Randomized Controlled ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Background: We sought to identify factors that influence surrogate decision makers’ decisions to enroll patients into a critical care randomized controlled trial. Methods: We conducted a qualitative study embedded within a randomized controlled trial testing the effect of a behavioral nudge intervention for surrogate decision makers on enrollment rate in a sham ventilatory weaning trial among patients with acute respiratory failure. Participants were adult surrogate decision makers of patients receiving mechanical ventilation for acute respiratory failure. The study was conducted in 10 ICUs across 2 urban hospitals within an academic medical center in Philadelphia, Pennsylvanaia, United States. Immediately following their trial enrollment decision, surrogate decision makers were asked to enter free-text responses about the factors that influenced their decision. Responses were analyzed using content analysis. Results: Of the 90 (49%) participants who provided free-text responses, the mean age was 54.9 years (SD 14.3), 69 (79%) were Caucasian, and 48 (53%) were the spouse of the eligible patient. We identified 5 themes influencing enrollment decisions: (i) trial characteristics, (ii) patient clinical condition, (iii) decision making processes, (iv) altruism, and (v) enrollment attempt. Among surrogates who enrolled the patient in the trial (n = 40), the most commonly cited factors were helping future patients (n = 24, 60%) and following the patient’s wishes (n = 11, 28%). In contrast, those who declined enrollment (n = 50) most commonly reported that the patient was too sick (n = 27, 54%) and that they feared complicating the patient’s condition (n = 11, 22%). Conclusions: Surrogates who enroll patients into trials most often cite altruistic motivations, while those who decline enrollment are most often concerned with the severity of the patients’ condition.

scholarly journals Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience Among Surrogate Decision-Makers of ICU Patients (EMPOWER): Study protocol for a randomized controlled trial

2019 ◽  
Author(s):  
Holly G. Prigerson ◽  
Martin Viola ◽  
Chris R. Brewin ◽  
Christopher Cox ◽  
Daniel Ouyang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Controlled Trial ◽  
Decision Makers ◽  
Icu Patients ◽  
Emotional Resilience ◽  
Life And Death ◽  
Randomized Controlled ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract Background Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers or surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience among Surrogate Decision-Makers of ICU Patients) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients’ quality of life and death and dying as well as surrogates’ mental health. Methods Clinician stakeholder and surrogate participant feedback (n=15), as well as results from an open trial (n =10), will be used to refine the intervention, which will then be administered as a multisite randomized controlled trial (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of posttraumatic stress disorder (PTSD), prolonged grief disorder (PGD) and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at one-month and three-months from baseline. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment on. Participant exit interviews will be conducted at the three-month assessment time point and will be analyzed using qualitative thematic data analysis methods. Discussion The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application. Trial registration: ClinicalTrials.gov Identifier NCT03276559 (Retrospectively registered September 8th, 2017)

scholarly journals Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience Among Surrogate Decision-Makers of ICU Patients (EMPOWER): Study protocol for a randomized controlled trial

2019 ◽  
Author(s):  
Holly G. Prigerson ◽  
Martin Viola ◽  
Chris R. Brewin ◽  
Christopher Cox ◽  
Daniel Ouyang ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Decision Makers ◽  
Post Intervention ◽  
Icu Patients ◽  
Emotional Resilience ◽  
Life And Death ◽  
Randomized Controlled ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Abstract Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience among Surrogate Decision-Makers of ICU Patients) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients’ quality of life and death and dying as well as surrogates’ mental health. Methods: Clinician stakeholder and surrogate participant feedback (n=15), as well as results from an open trial (n =10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of posttraumatic stress disorder (PTSD), prolonged grief disorder (PGD) and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at one-month and three-months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment on. Participant exit interviews will be conducted at the three-month assessment time point and will be analyzed using qualitative thematic data analysis methods. Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application.

scholarly journals Treatment choice when faced with high risk of poor outcome – and response to decisions made by surrogates on their behalf

2020 ◽  
Vol 8 (11) ◽  
Author(s):  
Charlie Corke ◽  
Stella-May Gwini ◽  
Sharyn Milnes ◽  
Ben Jong ◽  
Neil Orford
Keyword(s):  
Online Survey ◽  
Treatment Choice ◽  
Decision Makers ◽  
Care Plan ◽  
Poor Outcome ◽  
Advance Care Plan ◽  
Hypothetical Scenario ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Surrogate Decision

Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers. We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker. Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed. This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective. Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions. Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.

Prognostication and Ethics

2018 ◽  
pp. 265-275 ◽  
Author(s):  
David Y. Hwang ◽  
Douglas B. White
Keyword(s):  
Traumatic Brain Injury ◽  
Decision Making ◽  
Decision Makers ◽  
Care Planning ◽  
Shared Decision ◽  
Inappropriate Treatment ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Key Topics ◽  
Surrogate Decision

This chapter provides an overview of prognostication and key topics in ethics as they relate to the practice of neurocritical care. Challenges with prognostication are summarized. Outcome prognostication tools for ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and traumatic brain injury are outlined along with a discussion of their limitations. Best practices for communicating prognosis are reviewed. Shared decision-making with surrogate decision-makers in intensive care units is discussed in detail, with attention to advance care planning documentation and resolution of situations in which clinicians may have conscientious objections to potentially inappropriate treatment.

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